named programs · 3 · from sources
What they call their work
Convection-Enhanced Delivery (CED) Research
Develops and tests convection-enhanced delivery methods to administer targeted therapies directly into brainstem tumors in children, particularly for DIPG.
Immunotherapy and Targeted Therapy Development
Advances novel immunotherapies such as CAR T cells and radio-immunotheranostics (e.g., 124I-omburtamab) for CNS malignancies.
Pediatric Brain Tumor Research
Supports laboratory and clinical research on pediatric brain tumors including diffuse midline glioma, using patient-derived models and molecular profiling.
activities · 8 groups
What they do
-
Cancer Awareness and Education Initiatives 2 activities
- Advocating for pediatric brain tumor research fundingEngages in advocacy efforts with organizations like the American Association for Cancer Research to promote sustained federal and state investment in pediatric brain tumor research by meeting with New York State representatives.
- Collaborating on public awareness campaignsPartnered with DDB Health to produce and release a public service announcement (PSA) to raise awareness about childhood brain tumors and encourage public support and donations.
-
-
Cancer Research Funding 2 activities
- Contributing scientific resources to research networksShares tumor tissue, cell lines, and research data with the Children’s Brain Tumor Network to support broader research on childhood brain and central nervous system tumors.
- Funding pediatric brain tumor researchProvides financial support for pediatric brain tumor research at Weill Cornell Medicine, including funding student fellowships and research initiatives focused on rare and inoperable tumors.
-
-
Biomedical Research and Innovation 1 activity
- Conducting pediatric brain tumor researchOperates the only laboratory in the U.S. exclusively focused on rare and inoperable pediatric brain tumors using an integrated, multi-disciplinary approach. Conducts translational research to advance drug delivery and reduce treatment toxicity, including genetic sequencing, bioinformatic analysis, high-throughput drug screening, and development of patient-derived xenograft and mouse models for tumors such as DIPG, thalamic gliomas, and ependymoma.
-
-
Disease-Specific Clinical & Patient Education 1 activity
- Distributing patient and family support materialsProduces and distributes Starfolio notebooks containing medical organization tools and educational resources about pediatric brain tumors, and shares quarterly newsletters with updates on research, patient stories, events, and lab news for families and donors.
-
-
Cancer Peer Support & Wellness Programs 1 activity
- Operating a peer companionship programPairs pediatric brain tumor patients and teens facing brain surgery with previously treated young patients to provide emotional support, build friendships, and assist with preparation for treatment and surgery through one-on-one conversations and shared activities.
-
-
Charity Event Organization 1 activity
- Organizing fundraising eventsHosted a comedy gala event attended by 300 guests to raise funds in support of pediatric brain tumor research.
-
-
Medical Professional Education & Training 1 activity
- Providing undergraduate research trainingOffers hands-on research experience in neuroscience and pediatric neurooncology to two undergraduate students annually for eight weeks.
-
-
Uncategorized 2 activities
- Developing standardized research and clinical outcome measuresCo-authored a national consensus study to establish standardized outcome measures for pediatric brain tumor surgery and develops core outcome sets for the NeuroPoint Alliance Quality Outcomes Database Pediatric Tumor Surgery Registry using Delphi methodology.
- Participating in and supporting clinical trialsConducts and participates in Phase 1 and Phase 2 clinical trials for pediatric brain tumors, including a dose-escalation trial using convection-enhanced delivery of 124I-Omburtamab for DIPG and a trial of veliparib with irradiation and temozolomide for high-grade glioma, in collaboration with the Children’s Oncology Group and Weill Cornell Medicine.
-
financials · form 990 · fy2024
revenue
Total revenue$711K
Contributions & grants$760K107%
Program service revenue$00%
Investment income$12K2%
Other revenue$-61K
expenses
Total expenses$760K
Program expenses97%
Admin / overhead2%
Fundraising1%
Salaries & benefits$14K
Grants paid out$710K
Largest expense lineCompensation
balance sheet
Total assets$127K
Cash$106K
Investments$21K
Liabilities$0
Net assets$127K
Liquid reserves2.0 mo
3 years on record · 2022–2024 · YoY revenue -34.2%
leadership · form 990 part vii · fy2024
Who runs it
board members · 9
- ANTHONY TRIMARCHI — PRESIDENT
- CINDY CAMPBELL — TREASURER
- DANA MACNAUGHTON — DIRECTOR
- EMMA HILL — VICE PRESIDENT
- KATHLEEN O'CONNELL — DIRECTOR
- KYLE FISHER — DIRECTOR
- SHIRAH DUNPHY — DIRECTOR
- TESSA NASO — DIRECTOR
- TINA PELOQUIN — DIRECTOR
relationships · 28
Who they work with
- American Association for Cancer Research Partner — Collaborated with AACR on advocacy efforts to promote federal investment in cancer research.
- American Association for Cancer Research (AACR) Partner — Collaborated with CBTP Program Director Cindy Campbell during advocacy efforts for federal investment in cancer research.
- Children's Brain Tumor Foundation Partner — Collaborates with the Children's Brain Tumor Foundation to share family resources, including a comprehensive guide for families of children diagnosed with brain tumors.
- Children's Cancer Association Partner — References the Children's Cancer Association as a source for a comprehensive resource guide for childhood cancer families.
- Children’s Brain Tumor Network Partner — Original member and collaborator in sharing scientific resources for childhood brain and CNS tumor research
- Children’s Brain Tumor Network (CBTN) Network — Member of the Children’s Brain Tumor Network, contributing to collaborative, open-science research in pediatric CNS tumors.
- Children’s Brain Tumor Tissue Consortium Partner — Collaborates with the Children's Brain Tumor Project at Weill Cornell Medicine on pediatric brain tumor research.
- Children’s Oncology Group Partner — Collaborates on a phase 2 trial of veliparib, local irradiation, and temozolomide for high-grade glioma.
- Children’s Oncology Group Partner — Collaborates to offer clinical trials in partnership with hundreds of hospitals worldwide.
- DDB Health Funder — Produced and funded a public service announcement to raise awareness about pediatric brain tumors.
- DDB Health Partner — Collaborated with the organization to create a public service announcement on childhood brain tumors.
- Dr. Jeffrey Greenfield Partner — Principal investigator and mentor in the Children’s Brain Tumor Project Summer Undergraduate Research Fellowship.
- Dr. Mark Souweidane Government — Medical professional acknowledged by the founder for his role in her treatment and recovery.
- Dr. Mark Souweidane Partner — Principal investigator and mentor in the Children’s Brain Tumor Project Summer Undergraduate Research Fellowship.
- Dr. Nadia Dahmane Partner — Principal investigator and mentor in the Children’s Brain Tumor Project Summer Undergraduate Research Fellowship.
- Englander Institute of Precision Medicine Partner — Member organization with access to over 300,000 compounds for drug screening
- GC Global consortium Funder — Provided a $100,000 grant to study diffuse pediatric brain tumors including gliomatosis cerebri.
- Gift from a Child Partner — Collaborates to gather tumor tissue samples through rapid autopsy
- NeuroPoint Alliance Partner — Collaborates on developing a core outcome set for the Quality Outcomes Database Pediatric Tumor Surgery Registry.
- Pediatric Brain Tumor Foundation Partner — Partners with the Pediatric Brain Tumor Foundation to distribute the Starfolio notebook and promote the Imaginary Friends Society resources for children in treatment.
- Rockefeller University Partner — Member organization with access to over 300,000 compounds for drug screening
- The Cure Starts Now Foundation Partner — Provided grant funding to support a Phase 1a clinical trial in children and young adults with DMG, including DIPG.
- Weill Cornell Medical Center Partner — Host institution and research partner for the Children's Brain Tumor Project.
- Weill Cornell Medicine Network — Host institution for the Children’s Brain Tumor Project and site for clinical trials and research.
- Weill Cornell Medicine Partner — Collaborates on research initiatives including pediatric brain tumor studies and consensus development.
- Weill Cornell Medicine Partner — Collaborates with Weill Cornell Medicine, where Dr. Mark Souweidane is affiliated, to provide expert-reviewed pediatric brain tumor information and resources.
- Weill Cornell Medicine Partner — Host institution for the Children’s Brain Tumor Project research lab.
- Weill Cornell Medicine Partner — Hosts the summer research fellowship program in the Department of Neurological Surgery.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Data and Sample Sharingmethodology: collaborative_researchBy aggregating and sharing genomic data, tumor samples, and cell lines with national and international research consortia, the organization accelerates clinical trial development, because rare disease research benefits significantly from large-scale, collaborative data pooling and open science practices.
- Multi-Disciplinary Integrated Researchmethodology: multi-disciplinary_integrated_researchBy integrating four interconnected research pillars—precision medicine, immunotherapy, drug delivery, and developmental biology—the organization accelerates discovery of cures for rare pediatric brain tumors, because cross-pollination across disciplines enables faster translation of findings and identification of novel therapeutic pathways.
- Peer-to-Peer Emotional Supportmethodology: peer_supportBy connecting young brain tumor patients with survivors through peer-to-peer support, the organization reduces isolation and improves emotional resilience, because shared lived experience fosters trust, understanding, and psychological well-being during treatment.
- Precision Medicine Based on Molecular Profilingmethodology: precision_medicineBy analyzing the molecular and genomic characteristics of pediatric brain tumors, the organization develops personalized prevention, diagnosis, and treatment strategies, because tumor-specific molecular fingerprints enable targeted therapies that improve clinical outcomes.
- Surgery-Informed Research and Drug Deliverymethodology: surgery-informed_research_and_drug_deliveryBy using surgical biopsy and resection samples to sequence tumors and study genetics, and by applying surgical techniques to bypass the blood-brain barrier, the organization improves targeted therapy development and delivery, because direct access to tumor tissue and localized delivery increases treatment precision and efficacy.